Optimising cohort data in Europe

3. The role of stakeholders 3.1. Stakeholder involvement

Stakeholder involvement was a key factor for the success of the SYNCHROS project. Stakeholders can be defined as an individual, group or organisation who may affect, be affected by or perceive itself to be affected by a decision, activity or outcome of a project (Project Management Institute, 2017). Their involvement or collaboration is sought for reasons such as helping to solve arising problems, achieving goals, increasing the availability of resources and improving the quality of products, services or outcomes (Krstic, 2014). Most opportunities associated with stakeholder involvement are related to participatory and decision-making processes (Mielke et al., 2016). Stakeholder involvement is considered an effective strategy for reducing the gap between research, practice and policy (Slunge et al., 2017; Nyanchoka et al., 2020), helping projects to remain close to the real needs and priorities within a specific field of research. Also, stakeholder involvement can lead to empowerment and joint ownership of research projects (Peters et al., 2017), motivating sponsors, promoting transparency in decision-making of the projects, enhancing support once projects have been completed and, ultimately, leading to sustainability of outcomes (Peters et al., 2017; Ray and Miller, 2017; Martinez et al., 2019). Another reason for involving stakeholders beyond the scientific community is the complexity of certain topics. Stakeholders can provide expertise based on information from their field (e.g. academia, funding agencies and regulatory bodies), which helps to understand and reduce project constraints and risks, and increase the potential success and acceptance. Stakeholder involvement is also indicated to increase relevance, legitimacy and credibility as well as effectiveness and (social) accountability of research (Mielke et al., 2016). SYNCHROS systematically addressed the factors that contribute to the gap between optimal cohort health-data exploitation and practice by understanding the context and identifying barriers to and solutions for the delivery of a sustainable, effective strategy that will maximise positive outcomes for a large number of stakeholders. To this purpose, the following actions were necessary: 1. To assess the current state-of-the-art concerning cohort data access, sharing, harmonisation and integration, thereby focussing on the methodological, practical, ethical and legal implications as well as potential issues related to the use of new data collection technologies. 2. To define the way forward regarding the implementation of potential solutions to overcome the identified obstacles, thereby presenting windows of opportunities and barriers.